Hey folks. This made it to c/all. Just wanna remind everyone that this isn’t a debate club or a place to share your opinions, but a support community for chronically ill people.
this post was submitted on 29 Jul 2025
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Chronic Illness
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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.
This is a support group, not a place for healthy people to share their opinions on disability.
Rules
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Be excellent to each other
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Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
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No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
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No denialism or minimisation This applies challenges faced by chronically ill people.
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No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.
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Respect the Group’s Purpose. It’s a support forum for people with chronic illness to vent and share and talk together. It’s not a place for healthy people to come and give their opinions.
Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.
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I'm not trying to be mean but this is a community with 500 subs with 1 post every week or two. I wouldn't worry about information getting buried in a meme post
They're asking people to be polite with their comments. Wouldn't be the first meme post to get snide remarks.
I mean that's fair, it's just there is this strange saber rattling like this around Lemmy sometimes where a very small community pops up on all. It's not terrible or anything I've just seen it pop up more often than you'd think.
For me in Lemmys state, just drive engagement! Moderate the trolls out of course but other than that just be loose.
This is of course my opinion and I'm not a community mod but there ya have it.
Moderate the trolls out of course but other than that just be loose.
They were moderating out trolls by being proactive about restating the rules? Do you understand that the moderators of this community are chronically ill as well? Reducing their workload by weeding out some of those people makes their job sustainable.
you can live with it and not understand it, but you can also understand it and not be able to empathize what its like to live with it. This statement sucks no matter how you look at it.
Yeah, the tweet's take is way too polarized. A one hour lecture? C'mon...
Go read up on what's involved. It helps if you know a doc personally.
I've had docs ask me if I was a med student just because I paid attention to what was going on and gently corrected when their diagnosis contradicted their own testing a few minutes before.
Docs are human too.
Yea, that's usually only true about specific medications shittier docs will randomly start pushing on their patients.
How long do you think doctors get to learn about diseases. It doesn't seem farfetched for a newly graduated doctor to have only had a 1 hour lecture on a disease, probably split over multiple ones. Plus some self studying. So if they never encountered it in real life afterwards, it doesn't seem too wrong, does it?
You're basically correct, but with a caveat or two. Disease tend to boil down to only a few basic etiologies: cancers = improperly dividing cells, autoimmune = body attacking itself, etc. There's a LOT of specific diseases out there, and the mind is finite. We discreetly go around the corner to check references (hopefully not Google) on our phones ALL THE TIME in the medical community, MDs to RNs. We might not know your exact symptoms off the top of our head, but even that varies from patient to patient within a single diagnosis. That's part of why a face to face consult is so important, and assuming that a doctor asking questions about your condition is ignorance is probably (usually) wrong... Also, I had a patient last week explain to me that high-voltage power lines cause cancer, and as a survivor of breast cancer, she was more knowledgeable about this than I was, so... It goes both ways sometimes.
Man this one could really go both ways.
It does go both ways, that's the point, no?
I feel like this tweet is conflating 2 different perspectives as the same thing. The doctor will have studied conditions and illnesses in aggregate while the individual experiences it personally on a daily basis. Conclusions drawn from both perspectives can contradict and both be true without invalidating the other. As a result, I don't see either as justified in using there perspective to disqualify the others.
I feel both sides could benefit from taking a more nuanced view of things and more openly listen to one another. I know that's an ideal and is not reflected in many people's experience, sadly, but wanted to highlight that no one need be wrong in this situation.
See it's perfectly understandable to not know every single little detail about the field you're trained in. What sucks is how rarely a doctor will admit they're out of their depth and need to read up on your symptoms or disease. From what I gather, this doesn't seem to just be my experience, but a rather common one. Whenever I see this post, I think about the following encounter.
Me: I have autoimmune hyperthyroidism, so, graves disease Doc: nope, graves disease is autoimmune hypOthyroidism, autoimmune hypERthyroidism is hashimotos
Like. These are so understandable to get mixed up when you're a GP. You've probably heard about each of these for like 10 minutes in uni and then studied about them for one test and forgot about them until they were relevant again. I get it, I've been the same about stuff I've learned in uni. Education isn't purely about retaining facts, and it's not humanly possible to retain every single fact you've ever learned.
What doesn't make sense is that I, who has the disease, is often quite debilitated by it, sees a specialist for it every month, and has to understand which symptoms are related to it and why (the thyroid does so many things, it's pretty complex) so I can report them to the specialist would confuse the disease with the opposite one.
So why tf do you default to me being wrong without a seconds thought or doing a 3sec web search? Think for ONE SECOND and you'll realise it doesn't make sense that I'm confusing the disease with another one that I do not have. Ugh.
That is a shit doctor. Get a new one. I got at least 4 questions on autoimmune thyroid diseases on my 300 question board exam a couple months ago. There's no goddamn excuse for that.
Graves Disease can lead to hypothyroidism through ablative treatment or if the thyroid burns itself out, but it's a hyperthyroid disease at baseline.
That behavior was pretty par for the course among all the doctors I've visited. A little more blatant than usual maybe, but the sentiment was one I'm used to. I stuck with him because he was the first ever GP out of the many I've tried to not dismiss symptoms I was describing.
I'm a 4th year medical student and I make a point of listening first and openly admitting if I don't know something and then I go look it up. I really detest the old-school doctors that are overly confident and paternalistic. It's a terrible way to practice medicine.
Honestly, it sounds like you want to be one of the good ones. Piece of advice, you were a bit dismissive with me. I said I had a bad experience that was common (among the chronically ill) and you told me you 'just get a different doctor'. As the experience is common, like I said, it genuinely isn't that easy. Most of us have tried many doctors and had an experience like this on some way with every one. So, I guess, the advice is, listen to patients who are disillusioned with the medical system and believe them when they share their experience. You seem to be super genuine and to have just had a small blind spot, so please don't take this the wrong way, I'm telling you this because I think you really want to do right by us and I think this could help.
I meant to be dismissive about that doctor's medical knowledge, not to be dismissive of your experience. I have my own complex health problems and I know that switching providers is not always easy, but if a physician who has been practicing for years doesn't know something that they put on the first and second levels of board exams, I would be suspicious of their expertise in other areas. Even before starting medical school, I would "fire" a doctor and get a new one if they told me something that was provably nonsense/wrong. Health is precious and should not be entrusted to people without the knowledge and humility to keep learning throughout their lives as medical providers.
May you never lose that sentiment or burn out over it.